CripCroakey: high time for political will & progress on the National Disability Strategy

When it comes to disability policy in Australia, all eyes are on the National Disability Insurance Scheme.

But, as El Gibbs reveals in her first #CripCroakey post below, the success of the NDIS relies on the less well known National Disability Strategy, which is running behind schedule and seen important targets slip away because of changing priorities of governments of different stripes.

She says the lack of political will and progress of the strategy “means that people with disabilities will continue to be shut out of wider society. Mainstream services will continue to be inaccessible and the hopes invested in the Strategy could be dashed.”

***

El Gibbs writes:

People with disabilities have long been at the margins of public life. They have been institutionalised, segregated, locked up and marginalised. Disability policy has reflected this, with people with disabilities shut away and crippled by a culture of low expectations.

Disability was seen as something to be fixed, cured, improved; peoples’ bodies not their own. This medical model of disability said that people with disabilities were broken, that their impairment was what is disabling and that the priority of public policy must be to remedy this.

Disabled activists worked hard to change these old ideas of disability, with the social model of disability emerging to push back on this idea of ‘brokenness’. Here, what is disabling is the stairs at the train station, or discriminating attitudes, or not having access to the right supports to have a shower or go to work. This social model puts the onus back on society as a whole to change, rather than seeing the disabled person as needing to be fixed.

People with disabilities have over the last few decades come out of the shadows and are taking their rightful place alongside everyone else. Policies that once meant that children were locked in institutions now call for early intervention therapies and mainstream schooling. The built environment became more accessible and laws were passed that are meant to protect against discrimination.

Disabled people now have a right to access the same services as everyone else, but how much of this change is reflected in public policy to do with disabled people?

‘Shut out’ no more?

In 2009 the landmark Shut Out report laid bare the stark realities of life in Australia for many people with a disability. The report came from work done by the National People with Disabilities and Carer Council, a rare coming together of people with disabilities, unions, carers and service providers to try to find common ground and be hopeful about achieving real change.

The Shut Out report collected stories of exclusion from a huge range of services other Australians take for granted, like education, work and recreation. Through extensive consultation, people with disabilities and their families emphasised that they wanted:

“a transformation of their lives. They want their human rights recognised and realised. They want somewhere to live, a job, better health care, a good education, a chance to enjoy the company of friends and family, to go to the footy and to go to the movies. They want the chance to participate meaningfully in the life of the community. And they are hopeful. They desire change and they want others in the community to share their vision.”

Story after story was told about how people with disabilities didn’t have access to the disability supports they needed, but also to mainstream services, such as health care.

“More than 29 per cent of submissions identified problems with health care. At consultations across the country many people passionately argued that the gaps are so considerable and care so compromised that people with disabilities experience not only a poor quality of life, but also threats to their very lives. These participants strongly argued that poor health care is contributing to a reduced life expectancy for people with disabilities.”

The National Disability Strategy (NDS) was developed in response to these stories, and is meant to drive change across all levels of government and across all public services from 2010-2020.

It was developed within the framework of the UN Convention on the Rights of Disabled Persons, bringing a human rights perspective to disability policy that says that people with disabilities have the right to participate in broader society.

The Strategy lays out how all levels of government need to change so that people with disabilities have the same access to services as all other Australians. Not more, or different, but the same. The same access to jobs and education, to transport and healthcare. The same access to opportunities and our common wealth as non-disabled people have.

However, few if any of these reports have so far been made public and the Department of Social Services (which has carriage of the Strategy) has told #cripcroakey only that they are coming “shortly”.

But now even these small steps forward are in danger of stalling, with key milestones being missed, and confusion about responsibilities and progress. At the same time, the National Disability Insurance Scheme (NDIS) is rolling out, not within a broader policy framework, but in isolation, meaning people with disabilities will miss out, yet again, on the same services other people take for granted.

The NDIS was developed to respond to specific shortfalls in disability services, such as aids and equipment and support at work and home, but was very clearly not intended to fund broader accessibility issues. In the NDIS regulations, for example, the health needs of people with disabilities are to be met by the health system with the NDIS not responsible for:

“(a) the diagnosis and clinical treatment of health conditions, including ongoing or chronic health conditions; or

(b) other activities that aim to improve the health status of Australians, including general practitioner services, medical specialist services, dental care, nursing, allied health services (including acute and post-acute services), preventive health, care in public and private hospitals and pharmaceuticals or other universal entitlements; or

(c) funding time-limited, goal-oriented services and therapies:

(i) where the predominant purpose is treatment directly related to the person’s health status; or

(ii)provided after a recent medical or surgical event, with the aim of improving the person’s functional status, including rehabilitation or post-acute care; or

(d) palliative care.”

The NDS was intended to provide incentive for change in mainstream services at the same time that the NDIS began to roll out, providing complementary but different systemic change that would mean that people with disabilities could start to participate in mainstream Australia. Without this broader structural change, the NDIS will only be able to make change at an individual level, which is important but can’t make social change possible.

Health of people with disabilities

The Strategy covers areas such as education, transport and housing, but for this #cripcroakey article, I want to look at the specific part of the NDS that talks about health and wellbeing.

The NDS recognises that people with disabilities “are among the most disadvantaged and invisible groups in our community with comparatively poor health status and a health system that often fails to meet their needs.”

Its key goals on health and wellbeing are:

all health service providers (including hospitals, general practices, specialist services, allied health, dental health, mental health, population health programs and ambulance services) have the capabilities to meet the needs of people with disability.

timely, comprehensive and effective prevention and early intervention health services for people with disability.

universal health reforms and initiatives that address the needs of people with disability, their families and carers.

support in government policy and program design for factors fundamental to wellbeing and health status such as choice and control, social participation and relationships.

These benign sounding policy outcomes disguise serious inequities in the current health system for people with disabilities. A 2012 Research Summary from VicHealth showed that people with disabilities are more likely to smoke, have less access to exercise and die at a younger age than other Australians. Fewer women with an intellectual disability have mammograms or are screened for cervical cancer.

People with disabilities often have poor health outcomes, but for some people with disabilities, those outcomes are dire. Aboriginal people with disabilities are more likely to end up in jail than receive appropriate supports. A recent report has highlighted how a cycle of over-policing, a lack of appropriate services and a disproportionate response to disability from the justice system means that:

“Aboriginal people with mental and cognitive disability are forced into the criminal justice system early in life. Coming from poor and disadvantaged backgrounds, they receive little support from community and disability services or the education system.”

The next #cripcroakey article will examine this in detail.

People with intellectual disabilities also miss out on decent healthcare. Those who live in institutions or group homes can die up to 25 years sooner than other people. The New South Wales Ombudsman 2015 report into reviewable deaths found, on average, the people who had lived in ‘disability services’ were 55 years old when they died, and the assisted boarding house residents were 59 years old. Some of the key issues identified were staff calling their manager, rather than 000; inadequate training for staff; not taking action to get urgent medical help and people with respiratory illness or chronic obstructive pulmonary disease never seeing a specialist.

The Ombudsman also notes that 83 per cent of people with disabilities who live in boarding houses are smokers, and that people with disabilities often lack access to nutritious food or exercise. They recommend that people with disabilities need to be a key target group for any public health messages, and that programs are to be developed specifically to suit them.

Given all this, it is not surprising that people with disabilities have higher rates of hospital admissions. In their submission to the NSW Health Plan, National Disability Services (the peak body representing service providers) said that “people using disability services and HACC (Home and Community Care) services make up about 20 per cent of the total hospital cost in NSW.”

National Disability Services highlights the gaps between the disability support system and the health system that people with disabilities can fall through.

“The unfamiliar and noisy environment of the hospital for anybody, let alone people with sensory and intellectual disability or mental illness, can cause confusion and distress. Therefore, the importance of support from people who have an appreciation for the challenges faced by people with disability cannot be overstated.”

This is why the Strategy is so important – changes to hospitals, staff training, public health strategies and are all integral to making sure that people with disabilities are able to be part of the mainstream health system. Without the goals and commitments of the NDS, what is going to make sure this happens?

Next steps for the NDS

One of the flaws in the design of the NDS has been the linking of progress and reporting to specific health policy processes that have proved vulnerable to a change in government. For example, the NDS recommends that all future National Healthcare Agreements include specific disability-specific outcomes, but these agreements have been scrapped. So what happens to the NDS component of them?

The same applies for the public health components of the NDS that specifically call for the overt inclusion of people with disabilities in any program developed to reduce chronic diseases, yet with the abolition of the Australian National Preventative Health Agency, these NDS proposals have also disappeared.

This is why it is important for the NDS to grow and evolve beyond these kinds of specific policy outcomes and become integrated in all levels of government policy. A commitment to improving the health outcomes for people with disabilities shouldn’t be brought unstuck by a change of government or political whims.

So what progress is (not) being made?

The 2012 report to COAG sets out clear timelines for all levels of government to make some kind of headway at fixing the inequities faced by people with disabilities. There was to be an evaluation of the first part of the Strategy in 2014, which hasn’t been released, then the second report, which was to be titled ‘Driving Action 2015-2018’, was due sometime in 2015, with the next part of the NDS due to start at the beginning of 2016. Various groups have made submissions and trusted that commitments that had been made and signed off by all levels of government would be kept.

At this stage, there is no sign of either report which casts doubt on the future of the NDS. A spokesperson for the Department of Social Security told #cripcroakey in September that:

“The strategy’s second implementation plan will be developed by the Commonwealth in partnership with States and Territories and is scheduled to be finalised in late 2015. The first progress report will be submitted to the Council of Australian Governments by the Disability Reform Council shortly. It will then be available on the Department’s website.”

The Department this week said it was unable to provide any further updates.

The lack of progress on the National Disability Strategy is more than disappointing; it means that people with disabilities will continue to be shut out of wider society. Mainstream services will continue to be inaccessible and the hopes invested in the Strategy could be dashed.

[My thanks to National Disability Services for making their submission available for this article. The Department of Social Security spokesperson responded to emailed questions about the progress of the National Disability Strategy.]

2 Comments

Kate

I have wondered where to get information about what is happening because so much seems to be but we mostly here gripes about the overall costs. Occasionally we see anecdotes in the media about good and bad experiences.

My neighbour has an intellectual disability and was in Sunbury for more than 30 years. She has managed with such proud independence in the community for more than 30 years now but the chronic illness which often accompanies disability is catching up with her. I don’t think the health system is all that useful to her at times. She needs it but finds it so hard to communicate exactly what is happening. There is a kind of conflict between her need and her amazing desire for independence.

She is on the DSB, not NDIS, and is keyed into agencies and people who can help which is so important. She has a wonderful guardian who has supported her for 35 years and a good network of friends who would do anything to help her maintain independence.

We all have deep admiration for the spirit of this woman but I think she is more fortunate than many others who are completely alone.

Vern Hughes

Most of the commentary about NDIS has come from people who know very little about disability or the transformation agenda in disability support that is known internationally as the ‘personalisation’ agenda. This agenda is largely unknown to Australian politicians, policy makers and think tanks, who by and large remain locked in a provider-centred approach to social policy and service delivery, rather than a person-centred or consumer-centred approach. Both Liberal and Labor governments are immersed in provider-centred thinking and practice.

NDIS is an ill-conceived reform. It was designed by four bureaucrats and consultants, and then imposed without consultation by the disability sector of service providers, consultants and academics. A handful of people with disabilities and a large number of families of people with disabilities warned that the scheme was ill-conceived, costly, and highly bureaucratic, but these warnings were ignored by the disability industry and the political class. Despite having managed a dysfunctional disability system for decades, service providers and the political class adopted a ‘reform’ in which the same people responsible for the dysfunction were assigned $22bn a year to ‘fix’ it.

NDIS is misguided because it ignores the low-key, inexpensive innovations in disability support already underway across Australia towards personalisation of disability supports. Instead of supporting and extending these innovations, it began with the creation of a brand new statutory authority and worked downwards. This is the standard model of top-down social reform in Australia. Rather than strengthening and supporting actual innovations on the ground, it began with a bureaucracy, a billion dollar budget, and a sector of pulsating vested interests. Having commenced in July 2013, NDIS to date has spent 82% of its budget on operating costs and 18% on people with disabilities.

This is an excessively centralised, bureaucratic and costly approach to reforming disability. It was conceived by bureaucrats and consultants, and is being implemented by bureaucrats and consultants, at vast and unnecessary cost to the taxpayers.

The political class and the political media have swallowed NDIS because they know very little about the field and fear that any critical scrutiny of it will be perceived as ‘lack of empathy for the disabled’. Political correctness is a curious and very costly phenomenon. NDIS should be the subject of critical scrutiny every bit as much as the NBN, but it is not. We have a failed and discredited political class in Australia and a weak culture of critical public debate.

Disclosure: I am a parent of two sons in their 20s with disabilities and who are recipients of the Disability Support Pension.

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